BFS Survey

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Re: BFS Survey

Postby fox2run on May 25th, 2009, 5:07 pm

1. 35
2. male
3. scandinavian
4. 2 years (wild), 6 - 15 years mild
5. pain / short illness
6. no
7. no
8. yes
9. feets, ankles, left shoulderblade
10. ahem...
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Re: BFS Survey

Postby megan on May 28th, 2009, 10:03 am

1. 22
2. Female
3. Caucasian
4. 1.5 years
5. No, but it started shortly after I was diagnosed with sudden onset headaches.
6. I was diagnosed with mild anxiety about 1.5 years before the twitching started.
7. None that I am aware of.
8. Yes, and still do.
9. Everywhere, but predominant in my hands, back, upper arms, legs and feet. Occasionally occurs in the back/front of my neck, face, and torso.
10. Definitely my face or my torso.

I also experience a certain degree of tremors, a certain degree of shaking upon excertion, buzzing and flickering sensations, heavy overstretched sensations, and often a feeling of cold in muscles.
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Re: BFS Survey

Postby jpstanley0 on June 5th, 2009, 11:05 am

1. Age = 31
2. Gender = M
3. Race = Caucasian
4. Length of time you have been twitching? = 4 months
5. Was there anything that appeared to trigger the twitching. = stress
6. Do you have any Anxiety or OCD disorders? = both, according to a psychologist
7. Any other medical conditions that may be connected to BFS? = no
8. Did you go through the typical ALS scare so common on this forum? = heck yes
9. Body region most affected? = all over, really
10. Most unusual area affected? = head, groin
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Re: BFS Survey

Postby blangjr21 on September 8th, 2009, 7:06 pm

1. Age = 24
2. Gender = Male
3. Race = Caucasian
4. Length of time you have been twitching? = A little more than a year.
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) = Not anything that I can remember or really pinpoint. Started with tingling feelings in my left side, than progressed to twitching and pain.
6. Do you have any Anxiety or OCD disorders? = Health Anxiety, but not sure which came first.
7. Any other medical conditions that may be connected to BFS? = Not that I'm aware of.
8. Did you go through the typical ALS scare so common on this forum? = Yes, possibly still going through it somewhat.
9. Body region most affected? = Varies depending on the day, however it seems to be most prevalant in my calves, biceps and fingers.
10. Most unusual area affected? = Abdomen and private area.
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Re: BFS Survey

Postby Greg Girardin on September 18th, 2009, 5:04 pm

1. 37
2. M
3. Caucasian
4. 5 months
5. Viral infection a couple months before it started
6. Don't think so, but have had a few anxiety issues in the last few years and many since this started.
7. No
8. Only if writing goodbye letters to all my friends, taking a 5 week sabbatical to get things off my 'bucket list', and almost quitting a good job in a weak economy count.
9. calves
10. places on the head I guess.
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Re: BFS Survey

Postby May1009BFS on September 18th, 2009, 10:53 pm

1. Age 34
2. Gender M
3. Race W
4. Length of time you have been twitching? 4 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) Maybe running a marathon 3 weeks before, maybe a cortisone shot I got 4 week sbefore.
6. Do you have any Anxiety or OCD disorders? Now or 4 months ago????
7. Any other medical conditions that may be connected to BFS? None, wait, let me obsess on it for a while.
8. Did you go through the typical ALS scare so common on this forum? Hell yeah.
9. Body region most affected? Calves.
10. Most unusual area affected? Triceps.
Feel free to add more

WTF? I was a very healthy 34 year old triathlete. Had not had a cold in 4 years. Never had any health obsession. Now? It s all I thinkg about.
"There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever"- Mahatma Ghandi

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Re: BFS Survey

Postby Keith R on September 21st, 2009, 11:28 am

Are there any non-caucasians out there with BFS?
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Re: BFS Survey

Postby Keith R on September 21st, 2009, 11:46 am

1. Age - 38
2. Gender Male
3. Race- Caucasian
4. Length of time you have been twitching? 2 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) 4 weeks after a flu. and during a time period of lost of stress
6. Do you have any Anxiety or OCD disorders? No
7. Any other medical conditions that may be connected to BFS? None
8. Did you go through the typical ALS scare so common on this forum? Ridiculously so!!
9. Body region most affected? Calves 24/7 all over.
10. Most unusual area affected? Not sure. I get single twitches everywhere, but the ones on shoulder blade feel pretty weird.

Feel free to add more
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Re: BFS Survey

Postby FrenchGreg on September 21st, 2009, 11:52 am

1 35
2 Male
3 Caucasian
4 4months
5 Birth of my daughter
6 OCD since I was a kid, I am seing a psy for 10 years !
7 No
8 YES ! Still I am not convinced it is not ALS
9 Hand
10 Stomach
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Re: BFS Survey

Postby Keith R on September 21st, 2009, 11:52 am

I went through the 24 pages of people out of curiosity. Couple preliminary observations. There is probably a bell shaped curve with regard to age. Most people are in their thrities. A bunch in 20s and 40s and a few outliers in late teens and fifties, etc.
Interestingly, extraordinarily caucasian predominant. There are a handful of hispanics, one african american and I think 2 asians.
Would be very interesting to look for genetic markers. There must be something that makes us more susceptible to twitch.
I wonder if we could still find all these people to get follow up data, etc. There really is not all that much written about the natural history/ progression of this syndrome.
Food for thought.

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Re: BFS Survey

Postby mahwah4me on September 21st, 2009, 3:20 pm

Hi keith,

just wanted to let you know that as a result of a difficult pregnancy my family has had extensive genetic testing. we are currently awaiting the results of our second microarray. A small deletion was found on both me and my daughter (who is fine by the way). They are not sure if any genes are involved as the deletion is so small, but maybe there is a link there? Should I discuss with genetics specialist?
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Re: BFS Survey

Postby Keith R on September 21st, 2009, 3:36 pm

Never hurts to ask.
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Re: BFS Survey

Postby Pete Borota on January 15th, 2010, 12:07 pm

1. Age -48
2. Gender - Male
3. Race - White, UK
4. Length of time you have been twitching? - 2 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) - Had a viral infection that affected my balance, maybe inner ear infection
6. Do you have any Anxiety or OCD disorders? - Did worry about chest pain I was getting, turned out to be a pelvic tilt problem that caused issues for my chest muscles.
7. Any other medical conditions that may be connected to BFS? - Globus, suffered with this for about 9 months
8. Did you go through the typical ALS scare so common on this forum? - Yes absolutely, devastating.
9. Body region most affected? - Calves and thighs
10. Most unusual area affected? - Twitch in my cheek occassionally.

Definately exercise related, I am intolerant of exercise that ramps up my twitching.
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Re: BFS Survey

Postby jawshater on January 15th, 2010, 2:29 pm

1. 27
2. Female
3. Half Hispanic
4. 3 months
5. Not that I can think of! Possibly just worrying and stress?
6. No disorders, though I am anxious a lot of the time!
7. No, but I have had unexplained body aches my entire life.
8. Yes, I still get freaked out some times because I have not been to a DR!
9. Tongue is constant, with calves and buttocks quite regularly
10. Tongue and lips (that really freaked me out).
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Re: BFS Survey

Postby LarooH on May 7th, 2010, 9:56 am

1. Age
2. Gender
3. Race
4. Length of time you have been twitching?
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)
6. Do you have any Anxiety or OCD disorders?
7. Any other medical conditions that may be connected to BFS?
8. Did you go through the typical ALS scare so common on this forum?
9. Body region most affected?
10. Most unusual area affected?
Feel free to add more


50
male
white (minnesota)
about 1 year
none that i know about
comes and goes with twitches
none
BIG time yes
lately it been thigh
not sure
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